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FARAFARA Cure FA

Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Holly Franz

HollyFranz1Name: Holly Franz

Age: 22

Where do you call home? Bedford, New Hampshire

Education (degree(s): BS in Marketing from Southern New Hampshire University

How long have you known you are living with FA? After two years of being misdiagnosed, I was officially diagnosed with FA at age 11.  Add a comment

Read more: Holly Franz

Jake Hayner

JakeHayner1Name: Jake Hayner

Age: 34

Where do you call home? Onaway Michigan

Education (degree(s): Some college

What is your relationship status? Single

What's a typical day for you? Parents get me up, help me dress, prepare meals, help with daily needs. I have a personal assistant that takes me to physical therapy. On the days I don't go, I have a workout routine I do at home. I may sit in my hot tub, visit my sister next door, and sit in the sun. I stand up in my stand up chair and listen to music. I watch a little tv, play a little PS-4, an maybe go for a ride with my mom.

How long have you known you are living with FA? About 17 years.

Are there any others with FA in your family? My older sister also has FA. She is 36 and lives next door.

Describe your transition from walking to walker/wheelchair. It was a very hard transition. I started to fall a lot, twisting and hurting my legs and knees. My parents rearranged the furniture so I had furniture to hold on to. They put up bars along the walls to assist me. I fought the wheelchair as long as I could, until I could no longer get around without it.  Add a comment

Read more: Jake Hayner

Chrissy Thomas

ChrissyThomas1Name: Chrissy Thomas

Age: 30

Where do you call home? I grew up in Atlanta, Georgia and now live in Greenville, South Carolina

Education: B.S. in Family and Consumer Science from the University of Georgia (Major: Child and Family Development)

Who do you live with? My husband, Nick

What's a typical day for you? My days are never routine, but typically I workout every morning. My husband Nick and I own a food truck and we work at least five days a week for lunch and dinner shifts. I work the window, and help with anything else Nick needs. I am usually exhausted after these shifts, but I try to keep a good balance in my life of hanging out with friends and family.  Add a comment

Read more: Chrissy Thomas

Carla Poletti

CarlaPoletti1Name: Carla Poletti

Age: I am 48 years young!

Where do you call home? I live in Paragould, Arkansas. This is in the northeast corner of Arkansas and about 70 miles west of Memphis, Tennessee. I was born and raised in Arkansas. The house that I live in is fully accessible and I am able to do pretty much anything. Even the kitchen counters, stove and sink are lowered so I am able to cook safely.

Education (degree(s): I graduated high school way back in 1986. I just can't hardly believe it has been 30 years! After that I went to a VoTech school where I earned a diploma in Data processing.

During my high school years I had plans of going to college and hopefully becoming something "successful." When I received my diagnosis the beginning of my senior year, I was scared, and really didn't know how much time I had left, so I chose vo-tech school. Looking back now, I know that I could have done college, but I really do feel like my life has been "successful." I have had many wonderful opportunities that have come my way regardless, and even because of my disability. I have had great jobs, served in my community, been active in my church and Ministry, been actively involved with MDA, have a happy marriage, am a daughter, sister, aunt, and have lots of great friends. I am generally healthy and very happy. No regrets! I am blessed indeed! 

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Laura Bishop

LauraBishop1Name: Laura Bishop

Age: 23 years old

Where do you call home? Bournemouth, England

Education (degree(s): I have a diploma in child psychology and I also have a blog website involving FA.

What is your relationship status? Who do you live with? I'm in a relationship. I live with my mum.

How long have you known you are living with FA? (When and how were you diagnosed?): I was diagnosed at age 15, my diagnoses went on since I was 13 because the specialists believed my walking etc was due to scoliosis.

Are there any others with FA in your family? No. My family and I had never even heard of it before. 

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Read more: Laura Bishop
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